I was looking for a picture showing ‘father and son’ – none worked. Look at this picture: who is the father – who is the son? Think big!

It may sound strange, but today was the first time in a long time I had a bit more than an hour with Pádraig on my own. So what does a father tell his son during ‘quality time’? Yes, you guessed it! Remember….? I know what Pádraig thought when I started. “Not again. How many times have I heard those stories? Can he not think of anything else?” A lot of my memories are about what looks like wrong priorities from today’s perspective. I set out to make the world a better place and failed miserably. While I was trying to do the impossible, I sometimes did not find sufficient time for the possible. When I was talking about my dream to sail around the world, Pádraig’s advice was to overcome my fear, to ignore any perceived risks, and go for what I thought would bring me happiness. What was I waiting for?

In a very strange way, what I often felt would be the right thing to do is happening now. I have not travelled as little as I have over the past year for decades. I have not spend more time with my family as I have been over the past months. And when I was talking to Pádraig today, I imagined what it would take to ‘enjoy’ life together, even under these very very difficult, tragic, and sad circumstances. “Remember….?” is what I asked Pádraig, and all of a sudden I remembered how he tried to live his live, and what he tried to convince me off in relation to leading my own life. He hated when I complained to people about things – my ‘favourite’ past time being writing letters to Ryanair and the European Air Passenger Regulator. He tried really hard not to push (in many ways) – making a point not to join the Ryanair cues (or lines:) in airport, boarding planes when everybody else had got on. While he drove me mad questioning everything I ever said about anything – he made a point keeping super-calm when I had problems controlling myself. OK, like for all of us, he didn’t manage to stick to his ‘philosophy of life’ all the time, but he tried really hard. And it worked: he managed to get better seats on Ryanair flights without asking; flight assistants provided him with extra food; people supported him and made things possible for him that others – even with a mammoth effort – would never have been able to achieve.

While I was talking to Pádraig, all of a sudden things became very clear.

Take life easy. Don’t allow what you can’t change to ruin your life and that of the people around you. Always make the best of what you’ve got (it mightn’t get any better). Think big and break borders (too many people restrict themselves to what they know). Keep exploring. All is possible. Accept and respect people as they are (you won’t be able to change them anyway) and they will accept and support you. Relax. Always look out for your family and friends. Eat and drink well, and keep good company. After a long night, see the sun rising on the horizon. And keep running – it clears the mind and keeps the body in shape (to a degree).

A few good news from Pádraig’s room today: there is a wheelchair in Pádraig’s room, not his ‘final’ model, but one the physios managed to locate in the hospital. Pádraig will be able to use that until the super dooper Vorsprung-durch-Technik chair will arrive. Because it is, apparently, harder to get Pádraig from his bed into a wheelchair and back into his bed than into the viva-la-thekla, he spent the afternoon (a full six hours!) in the viva-la-Thekla. Hopefully, tomorrow the right staff will be around to try out the wheelchair. We can’t wait! The other bit of good news is that when I asked him to lift his left food, he did; when I asked him to lift his right food, he did that too. Two to three times in a row. He just lifted the front of his foot, sometimes just his toes – but he moved his feet, left first, and then right; a number of times in a row. It must have been the marathon medal hanging over his bed:)

Today’s German Music Tip
Ohrbooten – Keine Panik (2010).

What’s hot
Wheelchairs
What’s cold
Theklas (though we still love them – it’s time to switch, right?)

The German word/phrase/verse of the day
Viele Deutsche waren noch nie in New York (headline in last weekend’s Husumer Nachrichten) – So?

The medal is for Pádraig

I’ll keep it short tonight. It’s a bit of a surprise to me myself that I am still awake. So, Cian and I finished the Haspa Hamburg Marathon in style. It was a perfect day for running: cold and overcast most of the day. And what a way to see the city. The run was pretty flat, a few ups and downs but no hills at all.

When Cian and I talked about our experience of the run, I could not believe how similar, almost identical it was. The first half easy, enjoyable, the kilometres (or miles, in Cian’s case) just slipped by. We both knew we could do 32km, and then it would be only another ten. And what are ten kilometres! Turned out that the last stretch, the last 3km were different. Someone had made them longer. They just went on and on and on. The main difference between our experiences was that I made the enjoyment last an hour longer. Cian did a wonderful time, really really good. So good he is going to sign up for Dublin, and try it a second time.

The Germans do not only have timetables for the buses, but also for Marathons!

I am really grateful that when I mentioned that I was thinking of doing the marathon, I said he would join – making the decision whether I was going to do it or not for me.

There were several points, especially towards the end, when I wondered could I really stick it; what was it all for.

Having finished, I know. I proved to myself that I will never give up. Not in a marathon, and never in more important matters. When I thought I had reached the end of my strength and power, there was more.

It took us just over two hours. To drive it. We wanted to get a feel for the route. Tomorrow’s first runners won’t take longer than this to run it. A real good friend and I are going to get up tomorrow morning and do those 42,2 odd kilometres. He’ll do it in a real good time, and I’ll finish.

Pádraig was fine today, quiet and relaxed – though he moved his leg out of his bed, after all this talk of running and marathons, he probably had decided to try and join in.

This marathon tomorrow will be for him.

The infection markers are going down. There will be an ‘interim’ wheelchair on Monday. If he does well with the speech therapist this coming Wednesday, he will be able to use the speech valve more than just once a week. No viva-la-thekla, but start of the Giro d’Italia in a room in the Schön-Klinik today – just over 3km, the computer said.

Have been checking the weather forecast for Hamburg all week and it seems that this coming Sunday it’ll be dry and cold-ish. Ideal marathon weather. Cian is aiming at <4hrs. I’m aiming to arrive. It’ll be great fun.

Pádraig’s friends at Aer Lingus Swimming Club will be organising a raffle at their annual Gala over the weekend of which they will take a part and contribute it to Pádraig’s fund. They have also organised an ice-cream van who will contribute part of its profit to Pádraig’s fund. We’ll keep our fingers crossed for good, hot weather in Dublin over the weekend, and a cool but dry day on Sunday in Hamburg.

Tonight, my head feels empty. Can’t think of German songs worth sharing, smart German words, or ‘hot’ or ‘cold’ topics. I’m wondering for how long our changed life has been going on, if I have really grasped what it means. I am not asking for how long our changed life will last. It sounds like a shallow phrase to say that it will never be the same again – because no-one’s life will ever be the same.

Tonight, I am ready to shut down, to not to think, to not to wonder, to go to sleep and deal with whatever the world has decided to throw at me tomorrow.

Besos y abrazos. Good night.

They said it on the news today. It’s, officially, the first day of summer. Can you believe it? The beginning of another summer. When the last one never ended.

Yesterday, our friends at the University of Limerick organised a wonderful concert with Cruinniú in the University’s Student Union Courtyard. My heartfelt thanks goes out to Cruinniú and everybody that organised the event, participated in it, and donated to Pádraig’s fund.

Sometimes, I’m looking for the right word. Sometimes I can find it. And then I forget. The world is so complex that I wonder sometimes whether there is any merit in trying to understand it. Because the moment I think I can unravel its meaning from one end and get a hold on it, it’s gone again, slipping out of my hands, my mind.

I make plans, try to stay on top, and underneath the earth seems to swivel like a spinning top.

There were no plans today, but it was pure bliss, just wonderful. You’ll remember the lovely singing and guitar from the other day. Today, we almost brought the house down! One of Ireland’s most talented uilleann pipes players gave a private concert for Pádraig and us, and – I’d say – the rest of Haus 2. It was just brilliant and such a privilege. There is sometimes a bit of a delayed reaction with Pádraig, but I am 100% certain that the power of these pipes and the beauty of the music will have a profound effect on him and his state of mind! We’ll see tomorrow and over the coming days – this powerful music will resonate with him for a long time! And the staff were over the moon: the first uilleann pipes concert in Eilbek, ever!

Some time ago, I mentioned one of my favourite songs from one of my favourite bands: Verdamp lang her by BAP. I included a link to the translation into English of that song. Well – the blog to which the link pointed disappeared and with it the translation. So, here it is. You can check the original version in ‘Kölsch’ (dialect of Cologne) and it’s ‘translation’ into standard ‘Hochdeutsch’ here. There are several versions of the song on youtube, this is the one closest to the original from 1981/1982, this is Verdamp lang her, Live in Rockpalast (2001/2006) with BAP and the really energetic Thomas D.

Enjoy.

A Damn, Long Time Ago

(1)
A damn, long time that I took almost everything so seriously
A damn, long time that I still believed in something
And then the shock, when it all turned out so differently
Strange how the rabbit runs at times
Not at all resigned, but pretty much disillusioned
A little something I’ve understood

(2)
How people follow you, when things go well
They pat your back, how they all court you
They call themselves your friend without even blushing
And the next day they just ignore you
It’s been a while that stuff like that left me clueless
And that disappointment dragged me down

(3)
I still remember when I just dreamed about things
Of things I did not even know how to look for
And missed finding them because I was too busy searching
And what it was anyway that I wanted to find where
My head full of nothing, just the instinctive few tricks
It takes a while to understand yourself

(4)
It was a time I didn’t even have bad luck
Not even that, a time I was not even fed up
There was John Steinbeck and there stood Joseph Conrad,
Between them me – but relatively checkmate.
It’s been a few years, but the memory is right here
It feels like only yesterday

Chorus:
A damn long time…

(5)
You ask me when I painted the last picture
If a song is all to make me feel satisfied these days
If I had arrived where I wanted to go yet
If my colors would not dry out this way?
I think I know, whether you paint it loud or paint it soft
What matters is that you paint at all

(Chorus)

A damn, long time that I visited your graveside
A damn, long time that we last talked
And that stuff got through from one to the other
So long that I almost can’t remember when
You firmly believed someone waited for you in heaven
You deserve it well that is what I said.

(Chorus)

When I first told my in-laws to be, ‘some’ time ago, that in Germany we had a time table at every bus stop and that it is for that bus stop only, nobody would believe me. Germans. Sure, how would a poor bus driver manage to get a bus to a bust stop at a set time each and every day, when the traffic is different from day to day? 25+ years later, here is the proof. And in the meantime, the time tables have got even better: they don’t just show the time for that particular bus stop anymore, they also show what the fee is going to be from that bus stop to any of the remaining bus stops down the route. Incredible.

Wednesday morning is our time to meet Pádraig’s Speech Therapist. This is the person who is working with Pádraig – not yet on his speech but on his swallowing, his breathing through mouth and nose, his use of the speech valve, and eventually on the removal of the tracheostomy, the tube in the anterior aspect of his neck through which he has been breathing for the past months.

To all of our delight, Pádraig was doing really well today. There were much less secretions, he tolerated the transition to breathing out through his mouth really well, the speech therapist even closed the valve altogether for a short time and he managed to breathe not just out, but also in through his mouth. The best thing of all was that he swallowed at regular intervals and quite effectively – meaning that there was little or no saliva moving down his trachea into his lung which could lead to infections. We were so happy to see how well managed, and to hear that confirmed by the specialist therapist. Brilliant!

Another really nice thing today was that staff had decided to dress Pádraig using one of the T-shirts his friends had brought over to Hamburg over the past weeks and months. It doesn’t sound like much, but it brought a sense of ‘normality’ into his room and to himself, into a situation that is anything but ‘normal’.

One disappointment today was that “Vorsprung durch Technik” might work for cars, but isn’t yet for wheelchairs – well, not yet anyway. Having measured Pádraig and having built the high tech tailored wheelchair for months, it turns out that it is too narrow, that the back is too short, and the headrest is to far out. Looking at this from another perspective (and someone actually said this to us): Pádraig is unlike any other patient they ever had. – No surprises here! And in many more ways than his proportions and size, I might add.

On the other hand, this is really small stuff that will be easily fixed. It’s great that he is going to get a brilliant, fitted wheelchair, and it is important that the technicians get it right. To balance it out, the physios are trying to locate an ‘interim’ chair, which is really nice of them.

Can’t believe that it was 20 years today that Riverdance was first performed as an interval act.

Today’s German Music Tip
Rossau – Fahrplanauskunft Deutsche Bahn. Great recording of someone trying to talk to a nice lady from the Deutsche Bahn asking her for information on train services to Rossau. A classic. Not a song. But a classic.

What’s hot
Wheelchairs
What’s cold
Wheelchair fitting

The German word/phrase/verse of the day
Boa eh!

A few steps did not work out today, as they do at times. It happens to everyone, all the time. It’s just that sometimes you care about it more than at other times. And some steps are more important than others.

Let’s start with the most annoying. This afternoon, I came back ‘home’ to do my slow 5km jog. I changed and was ready to go, to put on the runners and ‘stroll’ (breathless) through the early Hamburg April afternoon. Only I could not find my runners. Any other week and I would have been happy to have found an excuse not to ‘run’. But I am nervous as it is. Today, the official registration for this Sunday’s marathon arrived. I read somewhere that rest is even more important than the training. Is that true?

Moving on to the most disappointing. Turns out Pádraig’s ‘infection markers’ are slightly up. No clinical sign (yet), but enough to make everybody really cautious about what he should be doing. So it was decided not to continue with the use of the magic speech valve, at least not unsupervised and not today, as there is a chance that some of his saliva could have gone down into his lungs (rather than being swallowed ‘properly’ by Pádraig) – something which could, in the worst case, cause pneumonia. A reminder of this terrible idea of two steps forward, one step back. – And there we were yesterday, over the moon, thinking of all the ‘new’ sensations being re-discovered by Pádraig, smell, taste, air moving through his mouth, his nose, stimulating his brain, making him feel like getting better, being really relaxed with record oxygen levels. Now, we’ll have to wait and see what the coming few days will bring. Fingers crossed.

The best for last. Remember? The wheelchair? Far back? Yes?

Do you believe?

Well, you better do. Because the wheelchair, custom-made, tailored, fitted, and prepared especially and uniquely, by master German health engineers – well, it has arrived. YES! And you won’t be surprised to hear, that it won’t just be a job of sitting Big P into this chair… wayyyy too easy. Therefore, tomorrow he’ll have a fitting session. Like what you get if you buy a suit in Savile Row (not that I would know). Thursday is Labour Day, a public holiday around the world, except Ireland. With a bit of luck (do I still believe in having luck?) he’ll be out and about on Friday.

Pádraig continues to experiments with movements. He is moving his feet when asked. The music therapist today said he thought Pádraig was almost tapping his feet to the music today. He licks on a lollipop and swallows, several times in a row. Swallowing that is so important for him to manage so that he can get rid of the tracheostomy tube sooner rather than later.

Lastly – just heard the news that the two poor Anglo Irish Bankers had been led astray by the Financial Regulator and would, therefore, not go to jail. Most listen to the news again to see whether I missed an important detail…. Did the judge then jail the Regulator instead? — Corrupt bankers go free, sick people are emigrated, young adults in trouble are left on their own devices. When will someone tell the lads: enough is enough. Time to go.

Today’s German Music Tip
Tokio Hotel, Reden (2009?)

Wir wollten nur reden
Und jetzt liegst du hier
Und ich lieg daneben
Reden, Reden

What’s hot
Voice
What’s cold
No voice

The German word/phrase/verse of the day
Gesagt, getan.

I will keep the best for last.

What would you’ve done? Today, I went to the bottle bank. And there it was again: the dilemma. They thought they had thought of everything: they had put up a bin for green glass; a bin for white glass; a bin for brown glass. Then one day, over the weekend, someone arrived at our bottle bank and was faced by a dilemma. Check out the picture. Focus on the plates. Their colour. And they sign on the bin: “Nur für GRÜNGLAS” (Only for green glass). What would you’ve done? Was the person who left them on top of the bin, neatly stacked, a German or a foreigner? Could it even have been an Irish person?

The speech of a 17-year old boy was re-printed in theJournal today, a speech about the suicide of his cousin: “My cousin Glen McNally’s body was found in the canal this week but he should not be dead.” Don’t read this if you are depressed already. But if you think you’d be strong enough – read it. “Rabia” is the Spanish word for what I felt (how do you say that in English, Ana?). “Outrage” probably comes close. Where is the outrage? Forget about Angela Kerns’ salary, forget about water charges, forget about politicians smiling into cameras for the upcoming elections. How can we allow this to happen, this abyss of life and death?

As promised, here is the ‘good news’ story, finally.

Schön is not the word to describe what happened today. Someone had decided that Pádraig could be use a speech valve for as long as he tolerated it. A speech valve is a valve that can be put on the tracheostomy. It allows a patient to breath in via the tracheostomy, but they have to breath out through the mouth and nose. Imagine, for 10 months you have essentially not used your mouth and nose for breathing (except for a few minutes here and there). That means you have (almost) no sense of smell, little sense of taste, and you cannot use your voice. You are essentially dumb. There is no air going through your mouth and nose into your lungs, no air passing your vocal chords. Ever. Then, all of a sudden, someone ‘turns on’ the air and it goes up your trachea into your mouth and nose, on its way passing your vocal chords.

One of the really caring, nice nurses today managed to help Pádraig with the difficult and tricky transition from no air to air passing out through his mouth and nose. It took a lot of courage and trust to be able to do this. Pádraig did not know what was going on. He did not like it because he did not know it. It clearly caused him discomfort at the beginning. But then, the unbelievable happened: he relaxed and adapted brilliantly. The oxygen went up to 99-100  (max), his heart was good and relaxed. He did not just manage, he embraced the speech valve and when we left just after 8pm, he had been on it for more than 1 1/2 hours, and kept going.

There were two good friends here visiting Pádraig over the past two day, two of the nicest people you could meet. One of them is about to start a job with a US company in Dublin and wanted to see his friend before he was going start a new job. He’ll be off to Boston for initial training the coming weekend and I wish him all the best!

Just heard late last night that Patricia Healy from Pádraig’s old CRC Swimming Club had organised a swim event yesterday. She is already planning a follow up. I am trying to get some details and pictures and will make them available. Pádraig, or Paddy, spent many years with Patricia and chief coach Mary as his swim coaches in CRC Swimming Club. We never realised then know how brilliant those years were. I am whistling. Da da da daa dada…  Those were the days, my friend, we thought they’d never end.

Today’s German Music Tip
Good bye, Lenin – the score from the film of the same name. About a time that was not supposed to end.
“They’ve realised there is more to life than cars, VCRs and TV sets.” (26:30′)

What’s hot
Voice
What’s cold
Who could care less…

The German word/phrase/verse of the day
Ende gut, alles gut.

One second.

To the day, today: 10 months, or 43 Weeks, or 304 days, or 7296 hours, or 437,760 minutes, or 26,265,600 seconds ago.

26m+ of seconds ago, there was one second that changed Pádraig’s life. One second.

Since the Ford pickup truck hit him on Rt 6A on Cape Cod, he almost died several times. It’s because of his love of life, because of the love of his family and friends, doctors, therapists and nurses who cared for and about him, that he never stopped fighting the fight of his life. And that he is winning it!

The news, the really incredibly nice news from his room is that he had a full bath! Yes, a full bath. In his bed! It’s like a blow-up boat. They put it underneath of Pádraig, blew up the sides, filled it with water, and gave him a full bath! It was pure magic and really brilliant!

Today, I decided to celebrate (yes, I had to think about that one too). 10 months of the most incredible stubbornness, of not giving in, of not giving up, of ignoring what many people had declared the ‘reality’, the ‘likelihood’, the ‘hopelessness’. To hell with them, with all due respect. I don’t know anyone else (I am not biased!) who has touched so many lives in such a short time, who made such an impact on the world and the people around him almost beyond his own self, and who just never gives up, playing with a smile on his face against the odds (his friends would know more about that than he ever told me).

So, here is the message from Pádraig: Whatever you do. Never. Give. Up. – Ever.

Today’s German Music Tip
Fidl Kunterbunt, Der lange Atem (2012?).
Not all might like the (A) sign and association – but what the heck! I never heard about Fidl before I started to look for a song that would go with today’s blog, and I really do like the verse: “Es liegt an uns was zu riskier’n”.
(Just as a note: after I had linked from this blog to ‘Erika’ and ‘Vor der Laterne’ some time ago, youtube suggested to me, over several days, all sort of neo-nazi and militaristic material. I am already looking forward to youtube’s suggestions based on my choice of Fidl Kunterbunt today!)

What’s hot
Never give up
What’s cold
Grief

The German word/phrase/verse of the day
Langer Atem

Yesterday, we met a gentleman whose daughter acquired a severe brain injury in a car accident more than 20 years ago. It was an extraordinary meeting and he is an extraordinary man. I am sure that that meeting was just the first of many to follow. He said two things, I don’t want to forget. Ever. The first was that you never give up on people that are in his daughter’s or in Pádraig’s situation. Never ever. You always have to give all you can to support their way to recovery. The second point he made was that whatever you do for people like his daughter or Pádraig, you do it with the aim of getting them back to fully functioning and independent members of society. Two statements I find difficult to reconciliate with talk about return-on-investment in the health sector…

“To tell you the truth, I don’t really want to hear about problems – I want to hear about solutions”, a manager in one of my previous jobs used to say to me. What I ‘heard’ was, “go away and deal with the difficult stuff yourself and share with me the ‘glory’ of success”. Not a smart way to manage people, I thought. And still think.

The Germans have many problems (don’t get any of my non-German family started). One of these are ‘coat hangers’. Well, not the hangers themselves, but what to do with coat hangers when you want to dispose of them. As everybody knows, Germans are the world champions in separating rubbish. I will never forget the expression in the faces of my friends when they first came to Ireland some years ago and I showed them our one and only rubbish bin – they were looking for all sorts of different bins in all sorts of different colours for all sorts of different things. At this moment in time, the German government is in the process of issuing the ‘6th Regulation for the Modification of the Rapping-Regulation’ (or something like
this) which will, they hope, address the problem of the coat hanger.  The new regulation will need to be passed by the Bundesrat, though, so there are still some tense moments down the line. But once approved, Germans will, finally, be able to dispose of coat hangers in an easy-to-follow way: (1) if the coat hanger was purchased together with clothing, it can be dealt with as ‘wrapping’ and disposed of in the ‘yellow’ bins; (2) if the coat hanger was, however, purchased separately, it will have to be disposed of as ‘rest’-rubbish in the ‘grey’ bins as “Restmüll”. (Before you ask, they have announced that they already started to work on the ‘7th Regulation…’ which will, it is hoped in Government circles, allow Germans to dispose of coat hangers in just one and the same bin. Who’s to say the German’s make life more complicated than necessary?)

Just to avoid any confusion, the above is not a joke (you know the German sense of ‘humour’) but was reported by Der Spiegel magazine a week or two ago (17/2014, p. 46)

Pádraig today had more than five hours in the viva-la-Thekla. It was great to see him sitting out of his bed for the third consecutive day, though, maybe, it was a bit long for him. It was also quite warm today in Hamburg which wasn’t too comfortable for him either. His heart beat was up very high (for the first time in a long time), he had a slight temperature, and they were giving him some IV fluids, though nothing to worry about really. It was a good resting day for him today, following the live music session and the ‘dancing’ over the past two days. Really exciting stuff. One really great thing Pádraig did today was to move both of his feet when Pat asked him to do so. The effort was quite unbelievable for him to manage to do this, but he did manage, and he did move!

If I was to work in Government, and if I was to be asked to work on the ‘7th Regulation…’, I would not come up with more problems (such as: what to do with empty toilet rolls, or – worse – tea bags with compost, metal clips, and paper all in one), I would come up with a solution: make life easy, follow the Irish example.

Today’s German Music Tip
Tim Bendzko, Wenn Worte meine Sprache wären (recent). You can find the lyrics and their translation into English here.

What’s hot
rest
What’s cold
high: blood pressure, temperature, pulse

The German word/phrase/verse of the day
Mogelpackung