Just one minute before noon did we make it into the Husum Tax Office where we were to collect our tax numbers that we needed for some paperwork we wanted to arrange today. It was the most wonderful experience I’d ever had in a tax office. The people there were so nice and so helpful. But then, Husum is not Hamburg.

We were away.

We had a full day with meetings and things to be sorted out in Tating and Garding and Husum before we made it back to Hamburg. Last night we went for a pint in Lütt Matten in Garding only to find our precious pint glassed on a table saying ‘please take one’. We took them, and two other pint glasses. The pint I had was not a pint at all but a 0.4l glass of Guinness – with a clover leaf ‘painted’ on the head, but otherwise pretty dull black stuff. Another reason to get back to Dublin soon.

Both Pat and I woke up just after 3am last night, ready to turn Pádraig. It’s strange how you get used to an interrupted sleep.

We were thinking about this drive back into Hamburg on Sunday afternoons last year when we were always wondering what had happened to Pádraig in the Schön-Klinik while we had been away in Tating. – This time, we knew that he had been perfectly ok. Pat’s sister had been keeping us uptodate and we knew that if anything unusual had happened, she would have told us.

When we came back to Hamburg, Pádraig had a surprise visitor, an old friend who had planned to come over in a week or so but had a change of plan and decided to visit today. There will be more visits over the weekend from Dublin. It’s amazing to see how loyal Pádraig’s friends have been. How fortunate is he, with all the bad, terrible, and uncertain times he has been through, to have friends like he does.

He is still away, but at the same time so close to so many people all over the world. You know that. He knows it. There is a connection that is so strong and that has lasted for several years now. That connection will not fade away, to the contrary, it will get stronger and it will survive time itself.

There’s a great quote in Into the Wild by Christopher MacCandless: “Mr. Franz, I think careers are a 20th century invention and I don’t want one.” People used to get all consumed by their careers – I think they begin to realise that what is much worth than their careers are their family and friends. Myself included.

Today’s German Music Tip
Fard, Laufe & Laufe (Bellum et Pax Official Video). Back to German rap. This time it’s a song for runners, in a way. “Wichtig ist, dass Du nicht vergißt, wo Du herkommst.”
What’s hot
Running
What’s cold
Forgetting about your origins
The German word/phrase/verse of the day
HauHauHa! (expression from Nordfriesland)

An  Saol  Live your Life , An Saol eile

Pat’s sister is with Pádraig, Pat and I went up to Tating in the afternoon, back tomorrow. It’s almost unreal to be here and it’s like having travelled back to a different time. We went out to get something to eat and then had a pint in Garding – well, it wasn’t a pint but 0.4l. They were about to get rid of our beautiful pint glasses and we got there right on time to rescue them.

Terribly tired tonight, a tiny bit disoriented, but happy to see that we can have a day off together.

Pádraig is fine, is clothes are dry again. We thought, that big shower the other day was the first opportunity he got the get wet, to feel the rain on his head, his face, and his whole body. – There’re more exciting things to re-discover.

Today’s German Music Tip
Joris, Herz über Kopf. From Boris’ debut album published in April of this year, phenomenally successful and beautiful.
What’s hot
Rain on your cheeks
What’s cold
Being deprived of senses
The German word/phrase/verse of the day
Passaufbaimausteigen!

An  Saol  Live your Life , An Saol eile

It’s a lovely evening, following a day that was so full and packed I have trouble remembering how it started – maybe that’s just a first (?) sign of me being older than I sometimes think I am, or wished I was!

Anyhow – I got a power supply for my laptop. And thank you to all who offered to drop one by the house last night within minutes of that post going online! I could not believe it. That was some reaction.

Today, some of the pipework went in and will hopefully be finished tomorrow. Then the floors go in and on Monday week the bricks will be laid. That should take just 2-3 days which means that, with a bit of luck, the roof can go on the same week. To me, that sounds really fast. It also makes our trip back to Dublin seem quite real and not so far away, not so much just like a plan but like a reality.

I also got a few phone calls today. Both interesting in their own way.

The first came from Boston while I was driving back from the NCT (this time the car passed!!!). It was a lady from the Civil Rights Division of the Office of the Attorney General of Massachusetts whose office I tried to reach last week and for whom I had left a voicemail. She had never heard of Pádraig’s accident and her system did not show the receipt of any letter by myself. So I just faxed it to her again. She asked, had we filed a complaint with (I think) Internal Affairs – something nobody had ever mentioned to us before. We’ll see what happens.

The second call came from a gentleman working for our medical supplier who had just dropped by the house to leave some additional pieces for Pádraig’s wheelchair. But nobody had opened the door so he was wondering whether we were in. Eventually I got Pat on the phone who had run for shelter with Pádraig when it started to rain while they were on a walk. They got all soaked, she said, as they started to walk back to the house. When I rung the gentleman from the medical supplier to tell him what had happened and that Pat and Pádraig would be back in 10 minutes, he confirmed that, indeed, he had just experienced the ‘end of the world’ while sitting in his car. It must have been some rain ‘shower’. – But, isn’t it great that this kind of stuff is starting to happen to Pádraig again? Nothing like being caught in a shower! Wonderful!

Early start tomorrow. Getting a slot in Dublin airport must be really cheap at 6am:)

Today’s German Music Tip
Well, it’s not really just German – it’s more international. I found it, when I was looking for ‘Regen’ on youtube: 10 hours of ‘Regen’ with an unbelievable 6.2m hits!
What’s hot
Summer in the city
What’s cold
Raindrops keep falling on my head…
The German word/phrase/verse of the day
Das kann ich mir gar nicht vorstellen!

An  Saol – Live your Life – An Saol eile

Left in a bit of a panic this afternoon and forgot the powerrrr adapter in Hamburg. So this computer is running at 19% at the moment and will have to last for the next two days…I’ll keep it short today.

Pádraig was good today, Tuesday is the easy day with just one OT therapy session – where we found out that he had kept a few secrets from his therapist, for example that he is well able to squeeze his hand and move his fingers. She was amazed when we encouraged him and he showed her!

Still no word from the Governor or the Attorney General, nor the Departments of Foreign Affairs in Dublin or Berlin. Not even an acknowledgement.

Meeting the builder tomorrow morning. The building site looks a bit in a sorry state, loads of puddles and blocks laying around. I think we are waiting for the plumber…

That’s all for tonight, on an energy saving Tuesday!

It was an absolutely beautiful afternoon. The temperature outside was just right. The sun was shining. There was a light, warm wind blowing. The path through the park was just perfect. Pádraig really enjoyed this, though he was completely exhausted. This was as good as it gets.

His programme on this Monday could have been taken from that of a training camp: waking up a 6:30, getting ready for breakfast, standing bed (Stehbett), physio, speech therapy, lunch. The physio got me involved in the therapy on the Vojta physio table, doing exercises with Pádraig. I really enjoy this and I like the approach the physio is taking. It’s all about connecting, experiencing bodies, muscles, nerves, feeling the reactions. I had to stop after 20 minutes because I was exhausted. Even though I’m not the fittest, I could just imagine what such a session is like for Pádraig.

After a long and exciting day, and almost seven hours in his wheelchair, which, by itself is an achievement, he went to bed and started to have a good night’s rest.

I spent time today making appointments and arranging meetings for my visit to Dublin on Tuesday evening / Wednesday. The days are always packed and loads of things are happening. It’s all tiring but in a good way because it’s all about getting live back together: an sail eile, as someone said to me today.

There are times when things don’t look so bad, when it looks like as if another life is there waiting to be lived. To the full.

Today’s German Music Tip
Philipp Dittberner, Wolke 4 (Manouche Session). Never heard of Philipp Dittberger. Looks like this video was taken in the German version of Dublin’s Conradh. 1.5m clicks for a guy singing with a guitar and a bit of a piano. Not bad. In fact, really good!
What’s hot
Wind in your hair
What’s cold
Days that are getting too hot
The German word/phrase/verse of the day
Demokratie muss unsere Antwort auf den Terrorismus sein. (Angela Merkel)

An  Saol – Live your Life – An Saol eile

It just wasn’t explained to them sufficiently, otherwise they wouldn’t have voted ‘no’ in the referendum. Seven years ago, something similar happened in Ireland in relation to the Lisbon treaty. The Irish people voted ‘no’, but – so what? The nice thing about democracy is that you can have another vote until you get the ‘right’ result. If the people don’t get it the first time, well, you can try again until you get the ‘right’ vote. Angela should be on her way to Greece tonight, explain the issue to the Greek people properly (after all, Germany’s wealth depends on the Greeks repaying their depts) organise a second referendum for next Sunday, a proper referendum, get the right outcome and tell Alexis and Yanis to get on their bikes… Europe’s banks (mostly based in Germany) would be saved.

One of my all-time favourite films is Falling Down for which I found this brief summary of the opening scene: It “features Michael Douglas sitting in a horrible traffic jam in a car with faulty air conditioning. If you’ve ever been inside of a car that isn’t moving and has no air conditioning in a heat wave, you can understand how a person might go all Charles Bronson on people.” Check out the trailer or, if you want to watch one of the best scene of the movie, check out the Hamburger Scene – with one of the funniest lines, “Rick, I think we have a critic here”.

Hamburg is not quite “falling down” yet, haven’t seen a “hamburger scene”-type incident yet (we’re sticking to salads these days:), but we’re getting close to it. It’s just too hot, especially on this top floor we’re living in, especially without air conditioning. And it’s not just hot, the humidity is unbearable. The good news it that it should all get better tomorrow.

Talking about tomorrow. On the radio today, I heard someone saying that everything is in the past because the moment anything happens, it’s gone and in the past. An interesting view of the presence, isn’t it? – I have to think about that one a bit…

Pádraig hasn’t “falling down” yet either. But the weather is hard on him. We discovered what apparently everybody knows tastes just fantastic: frozen yoghurt. I stuck a yoghurt in the freezer this morning and when we got back from our walk, it was just ready: really cold and really refreshing. Pádraig had no problem eating this at all. In no time it was gone without a single cough. Looks like it is easier to eat things that taste nice.

Just today, it occurred to me that I had sent a copy of the Open Letter to the Attorney General and the Governor of Massachusetts to the Irish and German Departments of Foreign Affairs, Embassies, and Consulates. – Neither of them have acknowledged receipt, never mind answered.

I hear that some German friends would like to send letters asking for an independent investigation into the accident.

Here is an example in German and English of a letter to the Attorney General and the Governor (of which you could send a copy to the Außenministerium:).

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Sehr geehrter Governor/Attorney General,

ich möchte Sie dringend bitten, eine unabhängige Untersuchung des Unfalls von Pádraig Schäler einzuleiten, der am 27. Juni 2013 auf dem Weg zur Arbeit in Brewster, Cape Cod, von einem Truck angefahren wurde und sich seitdem in einem Zustand minimalen Bewusstseins befindet. Ich bin davon überzeugt, dass die von der örtlichen Polizei vorgenommene Untersuchung einseitig und unzureichend war. Ich danke Ihnen im voraus für Ihre Bemühungen.

Hochachtungsvoll,

---

Dear Governor/Attorney General,

I would like to strongly suggest to you to instigate an independent investigation into the accident of Pádraig Schäler who was hit by a truck in Brewster, Cape Cod, while cycling to work on the morning of June, 27, 2013 that left him in a minimally conscious state. I am convinced that the investigation conducted by the local police department was one-sided and inadequate. I would like to thank you in advance for your efforts.

Yours sincerely,

 

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Here are the addresses:

Massachusetts State House
Office of the Governor
Room 280
Boston, MA 02133
USA

The Attorney General’s Office
One Ashburton Place
Boston, MA 02108-1518
USA

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Today’s German Music Tip
Chris Doerk und Frank Schöbel, Heisser Sommer. This clip is a jewel, don’t miss it! It’s from the 1968 East German musical film of the same name, considered by promoters in 2001 as “The East German Grease”.
What’s hot
Customers – they’re always right
What’s cold
Hamburger joints not serving breakfast when you want it
The German word/phrase/verse of the day
Ochsenkopfantenne – I bet you’ll have to look that one up!

An  Saol – Live your Life 

It says 37oC on my phone. But, honestly, what would a phone know about the weather? It was built to make calls, not to be a weather station! Or was it?

Anyhow, I’ve arrived in the centre of the European heatwave. It must easily be above 40oC. That kind of temperature is unbearable unless, of course, you are on a summer holiday when you would be disappointed if it was any way else.

In Dublin, work on Pádraig’s extension is progressing. You can see where his new rooms are going to be, you can get an idea of the dimensions. In my mind I can see him moving in.

Next week, if all goes according to plan, the floors should be finished and the bricklayers should get started. No one is giving me a finish date, but we are still aiming for September.

Back in Hamburg, the windows were closed and the temperature in our apartment was approaching 30oC – still considerably less than outside. Pádraig was hanging in there, taking in loads of water, bathing his feet and hands in water. This weather is not easy for anybody, for him it must be agony. That he is hanging in there, that he is able to handle it, is brilliant.

When I go to Dublin I always plan to get a good night’s sleep. In reality, it never works out. Mostly for the right reasons. Yesterday evening, I visited a family who very kindly allowed me to see their house conversion and the car they had bought for their son who, like Pádraig, has an acquired brain injury. They visit their son during the day, so we met late in the evening and by the time we said good-bye it was way past midnight.

It was so good to talk to these parents who became our friends, and to see and hear what they have been doing to build a life for their son, as independent and supportive as possible.

The previous night, I had met two young men and one of their parents, also our friends now, who told me about all the incredibly hard work they are doing to get the best care and therapy for their sons. The work they are doing is phenomenal. The conditions under which they are doing this work with their sons is unbelievably hard.

Every day of their lives, every day from the time they get up in the morning until they go to sleep at night, they do what they can to make the lives of their sons better, helping them to become more independent and self-determined.

What makes the situation almost bizarre is that they are doing this often, if not always, completely on their own. You would think there was a health system supporting their efforts. From the perspective of these parents this is often not the case.

I could be wrong, but I am getting the impression that parents of children with an acquired brain injury would like their children to be at home if at all possible – if only they were getting sufficient support to do so. They are not getting this support. What they are getting is nursing home care. Nursing home care for young adults. An oxymoron.

I could be wrong, but creating an independent life, as independent a life as possible, is what most parents want to achieve for their children. This cannot happen in institutions.

Today is Independence Day, the 4th of July. There should be an Independence Day for young people with an acquired brain injury.

We need to build a road to “An Saol – Life your Live”.

 

 

 

 

PS: Any ideas how this logo could be improved? – Should it?

Today’s German Music Tip
Snaga, Mitternacht. This is classic rap made in Germany. These days, ‘rap’ is what the ‘Neue Deutsche Wells’ was some decades ago. It’s big.
What’s hot
Independence
What’s cold
Dependence without self determination
The German word/phrase/verse of the day
Alter, is das heiß!

Over the last two days I have met three families with young adults who also have a severe acquired brain injury. Today, I got a phone call from a young woman whose parents had a very bad car crash that left her mother.

There is nothing but huge respect you could feel for them. Their work is incredibly dedicated and meaningful. Every day they spent very long hours with their sons, every day they are fighting for their son’s welfare in a system that is telling them that they are hopeless cases.

Pádraig today went out for a walk in the part with Pat on Hamburg’s hottest day, so far. He is drinking now out of a water bottle and having a regular picnic in the park.

Happy 4th of July!

I thought I’d got up really early this morning until the man doing the groundworks on the extension said well, that’s about the time I get up every morning now. Right, I thought. 5am is not as early as I would’ve thought. A short walk, a train to the Hauptbahnhof, a train to Bremen, a tram to the airport, Ryanair to Dublin – and then, not the bus home, but a lift in a wonderful and comfortable car driven by a really good friend to his house where the best ever Irish Breakfast was waiting for me! It couldn’t get any better! After that, I was prepared for the day!

Builders, garage (trying to get the car fixed for the re-test), visit at a friend’s house. These friends had recently organised a coffee morning that generated several thousands of euro for Pádraig’s fund. Check out the photos here.

A trip out to a care facility in North County Dublin to meet the parents of two other young people with a very severe acquired brain injury, as well as, of course, their sons. I had not met them before, neither the parents nor their sons.

It might sound strange, but it was in a way one of the most wonderful experiences I’ve had for some time. I had heard to much about them before and had been looking forward to seeing them, meeting them, talking to them.

They are fabulous people, beautiful people who are trying to live life, their life, to the full.

Pádraig had a good day today, on a really warm, almost hot Hamburg summer’s day. The heat makes him a bit tired, but I’m sure he’s enjoying it. He’s eating is three meals a day, and taking in loads of fluids to make up for the sweat in this hot weather.

Big building-related meeting tomorrow morning.

Where is this letter? The one. Not all the others on my desk, on the floor, in the shelf, in the plastic storage boxes, in the arch lever folders, on top of the shelf, on top of the boxes, or in the kitchen. There must be hundreds of them from some state offices, the hospitals, the insurance companies, the courts, the waterworks, the electricity company, the carers’ company, the Wohnungsgenossenschaft, the Wasserbeschaffungsverband, the critical care company, the Apotheke, the bank, the credit card company, and I don’t know from whom else. They are all writing us letters. It’s a wonder there’s any trees left.

All those letters are here in this room. It’s a small room and it faces to the East which means that you better avoid it in the mornings, because these days it gets really hot when the sun shines in. I’ve looked through all of these hundreds of letters several times today. I’m telling myself how useless I am in organising all this stuff. All the letters are there. Everyone of them. But not the one I’m looking for. The important letter. The one.

I’m praying, I’ve tears in my eyes, I’m asking Pat: she’s the one who always finds lost items in our house, long after St. Anthony has given up (although, he might just take his time when I’m getting too impatient). Even she can’t help. There’s absolutely no sign whatsoever of this letter. Anywhere.

At least Pádraig’s had a good day today. No sign of a cold anymore. Three meals, small and pureed, but three meals. Pat went out for a walk with him and while I kept looking for this letter getting more and more desperate, the two of them enjoyed the blue sky and the sunshine. It’s not too hot here (yet), just a beautiful summer’s day. Physiotherapy and speech therapy sessions, followed by an occupational therapy session. More than he got on a good day in the hospital – especially if you count the walk in the park today as an extra two hours of therapy.

One last desperate look, passed all the really old papers and letters, down to the bottom of the transparent plastic box with the pink lid. An envelope with the letter in it. The one. I can’t believe it. The relief is something else. But still, why am I not better organised? Is the German in me dead and gone? What happened to the organised me? Did I just get overwhelmed by this masses of paper from all these people all looking for all sorts of stuff, from money to information?”

Off to Dublin tomorrow to check on the extension. I’ll take a day off during the weekend to sort out all the letter, answer them, fill them in, pay the amounts requested. A day might not be enough…

Talking about letters – the one to the Governor and the one to the Attorney General of Massachusetts have neither been answered yet.

Today’s German Music Tip
Gestört aber GeiL & Koby Funk feat. Wincent Weiss, Unter Meiner Haut. Uploaded mid March of this year, this song got 6.2m views on youtube. It’s a good song, I guess, they don’t play it on the radio, must be a club hit! I wonder is it the really cool apartment the two are living in that makes this so attractive?
What’s hot
Bins
What’s cold
Paperwork
The German word/phrase/verse of the day
Papier ist geduldig