I was looking through pictures I took since the end of June of last year. There are hundreds of them. One of them would have been enough. One of those roller coaster rides would have been enough.
The fact that we are in Germany and Pádraig is getting the care he is getting is a privilege. But it is a scandal, too. He is separated from his friends and his sisters and family.
When we listen to Irish radio and television these days, we hear about so many people coming home for Christmas. One of the songs that’s always aired is ‘Driving home for Christmas’.
Pádraig is keeping well these days. Slow and steady progress with eating and the capped tracheostomy tube. A few hours in the wheel chair, a short few stroll in the wheelchair on the roof terrace.
There is a lonely plastic tree on the ward.
It almost looks like another one of those hundreds of pictures I should never have taken, when one of them would have been plenty. More than enough for a lifetime.
Think about it: what do the Dreamboat and today have in common?
Last night we didn’t manage to get into Lütt Mattens in Garding. It was Christmas Song night and it turned out to be so popular that by the time we arrived, it was so packed that there was no way to get in and sit down. Last night was also an extremely stormy and rainy night and we thought that there was no way that, today, we could go for our early morning walk on the beach of the North Sea.
This morning, though, was very different. It was one of the most beautiful Sunday mornings we have seen here during the autumn/winter months. The sun was rising, the sky was blue, the sea roared because of last night’s storm, but the wind had quietened down, and it was just gorgeous.
The point? Probably no need to explain…
Pádraig was keeping well. There is a whole lot of things that he is not able to do, like walking, controlling his body, or walking, giving out, arguing, going out, debating. But he understands what we are telling him. He can eat. He can drink in sips. He can communicate with us, saying yes and no to things, using his tongue. He can, sometimes, lift his arm. He can squeeze our hands. He can hang on to my hand when I left it up. He can let go. He can breathe. He can cough.
We were devastated. Then we were full of hope. Now we are living a new life. An Saol. With you, with his friends, never on our own.
At 23:03 (GMT) today, this year’s winter solstice will take place. From now on, we’ll have longer, brighter days. Good for sailing. Down the stream. On the Dreamboat!
Solstice.
Today’s German Music Tip Chakuza, Dieser eine Song What’s hot
The gorgeous morning after a dark night What’s cold
Dark nights The German word/phrase/verse of the day
Du alten Dussel!
Saturday. The last weekend before Christmas. This time last year, we had just moved in to the apartment close to the hospital. Smoke alarm testers arriving just after 7am; a ring at the door by the man from the Wohnungsbaugenossenschaft who had just passed by the house and had noted condensation on the window; building work going on in the apartment next door starting at 7am and never ending.
All this seems to be so far away.
In a month, we’ll be moving again. This time not into a ground floor apartment, but into the one on top of a newly built house – with a nice roof terrace of our own and, what’s even better, with a lift Pádraig will be able to use to go out for a walk, onto the street with other people, old and young, dogs, cars, traffic, noise – life.
Pádraig has been using the ‘cap’ every day for more than four, almost five hours. If he can manage that for some time and manages ok, we hope that it’ll be easier to remove the tracheostomy at some stage. We also went out onto the roof terrace. It’s a long walk pushing Pádraig down the corridor in his wheelchair, picking up the key at the nurses’ desk on the way, and out into the cold, quite dark, and windy Hamburg afternoons, afternoons that look and feel like nights. It’s great that Pádraig manages to sit in the wheelchair for many hours every day without any bother. Sitting out and moving around a bit must be so much better than lying in bed. It’s not just better for circulation, it must also bring some diversion to these long days in his room.
Today’s German Music Tip Clueso, Du bleibst (Did I post this ‘tip’ before? I hope I didn’t:) Du willst mehr von der Welt seh’n, leb’ deinen Traum. What’s hot
Moving What’s cold
Being stuck anywhere The German word/phrase/verse of the day
Jez höa mia abba ma gut zu, mein Freund!
So when Pádraig was having ‘tea’, he was not actually having ‘tea’ but what I would call ‘Abendessen’.
We had ordered it and it promptly arrived for 6pm. I had never seen anything like it before. The nurse who brought it in said it was Vollkornbrot. Before I passed it on to Pádraig, I decided to taste it because it certainly did not look like anything near bread. Amazingly, it tasted exactly like bread although the texture was utterly different.
So, Pádraig had bread, and I added it to the long and longer becoming list of ‘firsts’!
We re-discovered Santa’s boot that someone sent to Pádraig last year. – Can you help us to find the person who sent it to him? Here’s a picture of it!
Today, Pádraig almost had two hours of music therapy. In the first hour, we sang German, English, and Irish Christmas songs. “Everybody can sing, but not everybody can not sing”, said the music therapist for encouragement. The second hour almost happened but we were on our way to the roof terrace, all rapped up, when the music therapist arrived and we decided that it would be too complicated to get back into Pádraig’s room and take off all the heavy clothing…
Today’s German Music Tip Udo Lindenberg, Stark wie Zwei – Die rufen gleich an und sagen es war doch nicht wahr… What’s hot Bread What’s cold Tea 🙂 The German word/phrase/verse of the day Vertrauen ist gut, Kontrolle ist besser. – Attributed to Lenin who apparently never said this – but something quite similar: “Nicht aufs Wort glauben, aufs strengste prüfen – das ist die Losung der marxistischen Arbeiter.” (Werke, Band 20. Dietz-Verlag Berlin 1971, S. 358)
Actually, there must be a few Santas out there – sending cards and packages all the way to Hamburg!
One 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.
Another 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.
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!
Pádraig 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.
He 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.
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?
Two 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.
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.”
“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.
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
