Santa

Tags

, ,

Santa came early this year.

Actually, there must be a few Santas out there – sending cards and packages all the way to Hamburg!

IMG_9764One delivered an incredible package with a year’s supply of sweat shirts and t-shirts all really nicely and professionally prepared for wear in a hospital. Really easy in and out, with the back open, but held together at the back with velcro and a tie. It’s so well done, I thought this is something that could be offered as a really great product to people in hospital who are sick and tired of hospital gowns, but can’t yet quite manage to pull t-shirts or sweat shirts over their head and over both of their arms.

FullSizeRender2Another package arrived with the ugliest reindeer I’ve ever seen on a card and on it, it just mentions a K.K.!? Together with that card (judge for yourself, it just proves that you cannot argue about taste:), there were some nice little pressies together with the coolest pair of sunglasses on the block, ready for the white glare on North Pole’s ice cap.FullSizeRender

When we were leaving tonight, Pádraig had been ‘capped’ for around seven hours, not breathing through the tracheostomy at all, but breathing in and out through his mouth and nose – all that while he was eating, ‘drinking’ (using a spoon), cycling, and being transferred between bed and wheelchair. All that time, he was relaxed with all the ‘vital signs’ in great shape. We took the cap off before we left as a precautionary thing – but if someone had staid with him for the night, just to be sure, he would have had no problem staying on it.

So, in our mind – this tracheostomy should be removed, at least that should be tried, and we’ll be working towards that!

Water

UnknownPádraig had an early start with a double session of physio starting at 8am. We made it, and so did the two therapists who were going to work with him for the best part of an hour and a half.

What they often do when they have a bit more time (double session:) is to get Pádraig on to the tilt table. That’s what they did today. They also told us that they are trying to stand Pádraig up three times a week, which is really great because it’s great for a whole wide range of things, not least his blood circulation.

To make it easier for Pádraig to hold his head, one of the therapists positioned himself in front of Pádraig, at eye level (the therapist had to stand up on a chair for that:), and then put Pádraig’s arms stretched out on his shoulders. I had never thought of it that way but it did take off some of the weight and pull on his shoulders and neck – which allowed him to keep his head straight for quite some time, without any help or support, which was really brilliant.

imagesHe just had a few minutes of rest after all this before the speech therapist came in, just to check what kind of food Pádraig could eat and whether it was ok for him to drink. So she took a spoon and gave Pádraig some water. And to all of our surprise he was able to handle it, no probs.

Well, there is another first.

In addition to the two-meals-a-day, we’ll start giving him some water to drink, a bit every day – who know’s where that will get us to! Isn’t it great?

Water, water, water,…. what does that make me think of…?

Today’s German Music Tip
Rolf Zuckowski, Nikolaus und Weihnachtsmann – a song we sang driving for hours on end around Christmas…
What’s hot
Drink
What’s cold
Water
The German word/phrase/verse of the day

Ich kenne die Weise, ich kenne den Text,
Ich kenn auch die Herren Verfasser;
Ich weiß, sie tranken heimlich Wein
Und predigten öffentlich Wasser.

Ein neues Lied, ein besseres Lied,
O Freunde, will ich euch dichten!
Wir wollen hier auf Erden schon
Das Himmelreich errichten.

(Heinrich Heine)


Driving

Tags

, , , ,

imagesToday was the day of the Weihnachtsfeier on ward 2L. (Why does that remind me of the 13 steps up and 13 steps down in the yard?) We got ready for 2.30 and went out to the corridor from where we could watch through the glass into the dining room where the hospital choir, Oberärzte and all, had assembled to sing Christmas carols. They sang really well. It almost felt a bit like Christmas would feel. A few people were crying a bit, I held back the tears.

We discovered there is a (protestant) priest in the hospital, he read out the nativity.

He also quoted Berthold Brecht – which I found surprising for a priest, given Brechts opinions about the church and things (just check out ‘Galileo’).

Though the whole affair was a bit strange, standing in the corridor, no access to tea and biscuits (!) for us, it brought a sense of Christmas and the festive season. I was thinking all the time that we really should be “Driving home for Christmas”. That’s what Christmas is all about. It’s not, not about being in a hospital, on the ward (or is it “in” the ward?).

Well I’m moving down that line
And it’s been so long
But I will be there

images1Beside ‘Stille Nacht’ they also sang ‘Halleluja’ by Leonard Cohen, which I also found strange and very much along the lines of the nuns singing the Beatles’ ‘Imagine’ without getting the line ‘…and no religion too’! :)

There was a time when you let me know
What’s really going on below
But now you never show it to me, do you?
And remember when I moved in you
The holy dove was moving too
And every breath we drew was Hallelujah

I mean… Yes, there is a Hallelujah, but even though it all went wrong, I’ll stand before the Lord of Song, with nothing on my tongue but Hallelujah…

It’s this thing about the English language, you get bits and pieces of it and you go “hallelujah”, it’s Christmas!

Most of the patients, there were about a dozen or so out of the around 30 on the ward (by the way: would it change the meaning if I’d said “in” the ward?), most of them a multiple in age of Patrick’s, most of the patients just enjoyed this half an hour of distraction.

There was even a group from the hospital’s kindergarten who sang a few songs and got a few presents in return. Everybody was happy.

Half an hour of distraction. A glimpse of what has been going on in the world outside for weeks. A glimpse of what life could be. Feeling, empathy, love, life and all. Well, we’re moving down that line. And it’s been so long, but we will be there.

This is the second Christmas Pádraig is in hospital. This year, he is so much better than he was last year. Next year, he won’t be anywhere near a hospital. We’ll be driving home. Or better: Sailing Home. In the Dreamboat. Promise.

[Don’t forget to tell everyone about the Dreamboat and Amhrán do Pádraig!

Today’s German Music Tip
Stille Nacht
What’s hot
Weihnachtsfeier
What’s cold
Weihnachtsfeier
The German word/phrase/verse of the day
Weihnachtsfeier

100

The day started badly. I woke up in a panic. It happens so often that I get mixed up with the time that I got paranoid about it. There is always this hour: one ahead in Germany, one behind in Ireland. Since my calendar started to schedule appointments for me it never managed to make up its mind whether it was making the appointments for me in German or Irish time – all of which also depends were I am at the time in question.

I kind of relaxed thinking that the appointment could not have been made for 7am. Yes, I know, the people checking the smoke alarms in our apartment arrived just after seven, and when they were renovating the apartment next door, the workmen also started at around that time. But a garage? Never!

I decided to play it save and guess what the guy in the grey kittle (it’s white for doctors, grey for engineers) said to me when I arrived at the garage at 7.20am? He said: I am so sorry but I cannot check the car out right now, the next appointment will be arriving in 10 minutes and that will not give me sufficient time for your car. Leave the keys and the papers here and I will squeeze you in some time during the day. Would you believe it?

It was 7.20am in the morning!

On the way back home on the bus, I thought for a moment that Michael O’Leary of Ryanair had taken over Hamburg bus: there were ‘stand-up seats’ at the back of the bus!

Thankfully, the day got better.

Pádraig once again got the magic 66/99 heart rate/oxygen levels ratio (that’s the figure you can turn onto its he’d and it still means the same, remember?). On a couple of occasions he even reach 100%. It literally couldn’t get much better than this. He continues to eat twice a day – and we are determined to make that ‘3’ next week! We’re also asking could he not drink!? Not completely liquid-dy things, but there is stuff you can put into drinks to make them a bit thicker so that there is less of a danger for it to end up in the wrong tube. We went out for a walk again on the roof terrace: 13 steps in each direction, a bit like Sing-Sing.

We asked would there be a Christmas event, with songs, smells, o tannenbaum, and general feels-like-Christmas type of stuff. There will be one on the ward tomorrow just after lunch, but Pádraig will not be able to join in. We won’t be able to bring in any Christmas tree look alike, and we won’t be allowed to take him out even for just a few hours. – We promised Pádraig that this will be the last, the very last not-so-much-fun-in-hospital-kind-a-Christmas!

Got word today that An Saol is now a registered non-profit. A bit of progress on this front too, so. A beginning!

Finally, just heard on the Irish News that Beaumont Hospital is asking patients not to attend its emergency department because of overcrowding. Leo agrees that this is not the ideal situation. But is he doing anything about it?

Island

Tags

, , ,

photoTwo eyes open and a big smile. Pádraig enjoyed that phone call from his aunt and sister today. The bit with the second eye open doesn’t happen that often; it hadn’t happen for a while…

I suppose John Donne wrote ‘No man is an island’ because, at least at some stage, that’s what he felt like. It became such a famous poem and even a saying because there are so many people who can identify with it. Have you ever felt like an island, entire of yourself, and not part of a continent?

Life is such a strange thing. On one hand: at the end of the day, it’s always just you. On the other hand: we only exist in community. And we swing back and forth between these two extremes. Love is like that. Family is like that. Friends are like that.

Pádraig had a good day today. We started to try out lunch. Ok, it was vegetables and a bit of chicken, pureed, though not like mash, with small bits and pieces. I was worried because when we had tried that before, some weeks ago, it didn’t really worked. Today, Pádraig almost finished the content of a small jar. It was really, really good. He was eating it well, ‘chewing’ it a bit, and swallowing really well. We went out onto the roof terrace. Twelve steps. In each direction. Up and down. Today, with a bit of day light, as the sun was disappearing on the horizon. You can see the horizon from the 5th floor. You can hear the train in the distance. A dog barking somewhere down below, amongst the trees.

Not that I knew, but this must be like what prison feels. Twelve steps up. Twelve steps down. For about 30 minutes. Listening to sounds somewhere in the distance that, for whatever reason, you can’t get closer to you. When was the last time that he was close to a dog, a train, a child, …?

No man is an island.

I hope you were listening to Céili House on RTÉ Radio 1 last night, with Kieran Hanrahan! It was listeners’ choice last night and Kieran played ‘Dreamboat’ from ‘Amhrán do Pádraig’, reminding his listeners that ‘Schaler’ had been on the programme some years ago. (They actually found that programme in the archives and are sending it over to us! – Thank you so much!)

We have been listening to Céili House for years on Saturday nights in a small cottage in Leitrim, in what Pádraig called ‘the middle of nowhere’. It’s the kind of programme that really and absolutely completely relaxes you, makes you feel at home straight away, and requires an open fireplace, with wood and turf glowing and slowly burning away.

No man is an island.

In case you missed it last night, here is the link to the full programme. And here is the link, if you just wanted to listen to Kieran’s lovely introduction at the beginning, the song itself, and then Kieran’s really nice remarks after he had played the song.

In the end, we’re all involved in mankind. We are in this together. Which is what gives us the strength to get through the difficult times. Which is what gives us this immense happiness in good times. Whatever happens, and no matter to whom it happens, it always happens to us. That is why we care. No playing politics. No return on investment. No profits. No country for profit. No giant tax free zone for multinationals. No tax cuts to buy votes. No man is an island.

We care. Because we never send to know for whom the bell tolls; it tolls for me, for you, for your brother and for your sister, for your mother and for your father, for your partner and for your friend. Dreamboaters. Together. For each other.

Really

Pádraig was good today. He was back in the wheelchair. He was back out on the roof terrace. He is back eating. But not just once. Twice. And this was just the first day of it. We’ll do that for some time. In no time, no time at all, he’ll be eating his three meals a day. Really.

No doubt about it.

Did you listen to the news today? Did you hear anything new? Let me guess.

Nothing, really.

And that is the really sad news.

Over the past few days, the Irish media were packed with news, comments, and statements from officials and politicians and journalists with appeals to the Taoiseach, our Irish prime minister, to “make this the best little country in the world for people with disabilities“, as Sara Burke did in The Independent last Thursday.

The papers and some commentators are having a go at Taoiseach Enda Kenny because they focus on a remark he made in the 2011 election campaign when he, as quoted by the Irish Times, asserted “to be making Ireland the best small country in the world in which to do business may not be total nonsense after all”. Recently, the Irish Times conceded that Enda Kenny is doing well delivering on his promise – “If you’re a multinational that is.

They don’t really do Enda Kenny justice, because what he is saying and what he repeated in a speech at the Dublin Chamber of Commerce Annual Dinner on 9th October 2014 in the Dublin Convention Centre is:

“It’s not just about the pay-cheque; it’s about their sense of worth, their place in the world, their contribution to their family, community and country.

This has been the goal from day one of Government: to be the best small country in the world for business, to raise a family and to grow old with dignity.”

The pity is, that, overall, he is focussing on the multinationals, as rightly observed by the Irish Times.

Here is what makes me really mad: EVERYBODY KNOWS!

There was another Prime Time report some months ago about not the first, but the 5th case baby death at Portlaoise Hospital. It revealed that the parents of the baby worked day and night to find out what had happened. They assembled all the details they could find and sent them to the Health Authorities to make them aware that something had gone terribly wrong in that hospital – only to find out, eventually and after months of hard work into the early hours of the morning, that the hospital, the people working there, and the health authorities had known what had gone wrong all along.

EVERYBODY KNEW,  except the people most concerned, but everybody that could have done something about it. There were new recommendations and new guidelines.

This morning, I heard on the news that the staff of the ICU in Beaumont Hospital is planning to go on strike because they feel that the conditions there are unsafe.

How on earth can politicians and the people responsible talk about investigations, commissions of enquiry, and pretend to be surprised and shocked to hear about what is happening?

They know. EVERYBODY KNOWS.

Really.

This is the best country in the world to find help and support when you most need it – from your family and friends. Now, lets ask the government to join us. Today, it’s their choice. Tomorrow, it’ll be ours.

Really.

 

Otherness

Tags

, , ,

Totally confused.

It was obvious when I came to Ireland in the eighties. I was German and this was a different country with different customs, people had a different way to deal with each other, and they didn’t stop asking me whether I liked it in Ireland (sometimes, people still ask me, and how do you like it here?:). And back then, when I told my Irish family that in Germany police was wearing pistols and everybody had an ID that they had to carry with them all the time by law, they looked at each other and said something that sounded like ‘police state’. But I was in a new country and I was still learning English and didn’t stop wondering about my new country.

It was a bit less obvious when we brought Pádraig to Germany and (re-)discovered what it means, in Germany, to rent an apartment, to buy a mobile phone contract, to make sure that there is no condensation on the windows (‘lüften, lüften, lüften’). I thought I was German, but looked at what was going on with my Irish eyes (often smiling at the German way of doing things).

It was completely messed up, durcheinander,  when I was in Ireland this week. What is the ‘other’ and what is ‘mine’? I kept taking pictures: at the airport where Connect Ireland in an attempt to lure new foreign investment to the country was trying to connect JFK, Enda Kenny, and Martin Sheen; then, when I got to my Aer Lingus flight, it all felt and looked like as if it was Ryanair in the old days: every bag was measured and checked for the maximum 10kg weight; and on a German magazine they were making fun of Germany’s most treasured seasonal symbol, Oh Tannenbaum, the christmas tree…. Is it me who is durcheinander or is someone, some dark force, trying to mess with me. All of a sudden, all was foreign, all was the ‘other’.

 

To be back with Pádraig was good. And then: he finished a huge portion of pureed apple with chocolate yoghurt, no bother. It was so good that we’ll try some ‘normal’ pureed food at noon, and the pureed apple in the afternoon tomorrow. It would be brilliant to get him back eating more regularly and, eventually, to get rid of the tube feed, the PEG.

And, Pádraig managed to get into the wheelchair for the first time after his operation. For just for a bit more than two hours. It was great. He must have felt really good. And now, after the operation, he doesn’t need a helmet anymore either. A whole new feeling.

Today’s German Music Tip
O Tannenbaum without and O Tannenbaum with, subtitles
What’s hot
‘Otherness’
What’s cold
Confusion about the ‘otherness’
The German word/phrase/verse of the day
O Tannenbaum

Turner

Tags

, ,

Loads of meetings and talks over the past two days. It is good to do ‘normal’ things though I wonder… For example, this morning I bought a coffee in the cafeteria in UL where my office is. It was €1.85. Going up to our meeting, I bought another coffee in the same cafeteria and I paid €1.65. The first was a ‘sit-down’, the other was a ‘take-away’ coffee. No other difference. Then I looked at the prices of stuff on offer. Remember, this is the university, most clients are students.

In case you can’t read it: Can of Coke €1.20; Smoothie €3.45; 7up €1.70; and – talking about water charges – a bottle of water for €1.70. The coke is cheaper in a corner shop, and the water is cheaper in the airport.

Then I bought the paper and got a brilliant Martyn Turner’s 2015 calendar with it for free. For each month, there is a cartoon, with a bit of an explanation underneath.

FullSizeRender

Underneath the cartoon, he writes that he was asked once to draw a cartoon for Christian Aid. Apparently, if all the multinational companies operating in Africa were made to pay their taxes their, there would be no need to pay rent. Turner connects this to Apple in Ireland…

Pádraig was good when Pat got back this evening. She told him a few funny stories, things that had happened here in Ireland. And for each of the four stories, she got a gerat smile. So, not only did he understand what Pat was telling him, he also still has his sense of humour.

It is great to be here, to see (or at least speak with:) our daughters, and just to be at home. But it’s also as sad as it can get. There is Pádraig’s room with is stuff. When I was cooking for us tonight, I could here the door to the kitchen being pushed open and a big guy coming in asking what was for dinner and when would it, eventually, be ready… How can he be in Hamburg, in a hospital, in a bed?

Run

Some, well: many, very many years ago, I decided to buy a CD with the movie Shrek in Germany. I thought it was so funny and entertaining that Pádraig and his sisters would like it so much that they wouldn’t mind that it was in German. It would be a great way for them to learn more German, in a fun way.

They were delighted.

Pádraig took the wrapper of, took out the CD, pushed it into the CD player connected to our telly, selected ‘English’ – and off they went having a great time, watching ‘Shrek’, laughing their heads off. Only that they movie was running in English. The tech guru that I am had not even thought about the possibility that CDs come in different language versions. Well, they do…

When I watched ‘Shrek’ in German (on my own:), I realised who badly translated all the nursery rhymes were. ‘Run, run, like the Gingerbread Man’, for example was translated literally, word by word. Good job, I thought, the kids had not watched it in German!

I had to think of that story yesterday, when Pat and I saw the German version of the Gingerbread Man, called ‘Stutenkerl’, with the typical pipe (the kind I had once used for my first smoking adventures).

Tonight, Pádraig’s big sister is with him. She’ll be there with him until Pat goes back tomorrow. Today was such a busy day that I can’t think clearly, my head aches, my eyes hurt.

Just before I switch off the light, a thought about the scandal ‘discovered’ at this home in Mayo. What I haven’t heard any commentator saying is that there was nothing to be ‘discovered’. Everybody working there, including the management, knew what was going on, and if they did not participate, they allowed it to continue. In the same way that everybody in the ‘system’ knows that long-term patients in hospitals and homes, patients with severe acquired brain injuries, people who cannot protest, get injured and suffer with dropped feet, dangerous bed sores, and injured shoulders. Everybody knows… “how the State treats the most vulnerable people” (RTÉ news at 9, tonight).

Today’s German Music Tip
Udo Lindenberg, Gegen die Strömung – As a song, it’s ok. As a title, it couldn’t be better. The world needs more people moving against the current, against the wind, being themselves, knowing what is right and what is wrong.
What’s hot
Skrek
What’s cold
Run, run, Gingerbread Man
The German word/phrase/verse of the day
Stutenkerl

Separation

Tags

,

We separate for you! (So you don’t have to do it yourself.)

I am on my last trip away from Hamburg and Pádraig before Christmas. There will be a family visit tonight (probably over by the time I manage to send this), a very very very early drive across Ireland to the West, over to Limerick at lunch time, overnight stay there, back to Dublin in the evening, and back to Hamburg on Friday. (Just took a deep breadth when I finished writing this list. It’s longer than I had thought.)

We went to see Pádraig this morning before we left for the airport. He had been with a couple of therapists and they could not get over how alert he had been: movements and reactions all as per their requests. It was one of his really good days.

Handy: The Germans separate for you - at Bremen airport.

Handy: The Germans separate for you – at Bremen airport.

Tomorrow will be one of the very rare days when neither Pat nor I will be with Pádraig. We’ll be separated, in a way. But one of his sisters will be with him, and Pat will be back a day ahead of me.

It’s just after midnight now, time to go to bed. But before I go, I wanted to just mention that in between a hectic, long day, tonight I met with one of Pádraig’s great friends from whom I collected some of the CDs. When I write from Hamburg, I think about and feel the friendship and energy, and I know Pádraig does. However, being in the company of his friends is a completely different kind of thing. And I can probably not even just imagine, how that would be for Pádraig.

And two very last notes on what has been on the RTE +1 channel – we missed most of the report from that ‘home’ for people with disabilities, but watched the discussion. What the RTE investigative unit discovered was called by the reporters assault. – What would you call ‘treatment’ that leads to dislocated shoulders, haematoma, dropped feet, and spasms? I’ll stop here and go to sleep. It’ll be another day tomorrow.

Follow

Get every new post delivered to your Inbox.

Join 843 other followers