Someone from China asked me some days ago whether I was interested in writing an article for their publication, saying they would fully understand if I had no time time to do this as Christmas was approaching and they knew this was a busy time for family and friends. It was very nice of that person to be so concerned and she also demonstrated her knowledge of important European ‘holidays’. Although I thought: it’s still a bit early to be thinking about Christmas in September.

Pádraig was clearly getting better today. It was the last day of his “Onkel aus Amerika” visit and he really made a big effort for him. We think he is trying very hard to speak, it’s like whispering, as if he was talking but without having found his voice yet.

We just realised that he hasn’t been out of his bed or in the wheelchair since last Sunday. We’re afraid to cause him even more pain moving him out of the bed into the lifter, into the wheelchair, and then back into the lifter, into the bed. We’re also not doing his exercises and he cannot be turned onto his left. His left upper arm keeps changing colour, but it doesn’t seem to be getting much worse. His main consultant came in today and explained to us that with patients like Pádraig a spontaneous haematoma is, although it does not happen often, possible. The good news is that they are watching it now. It’ll all be downhill from here.

Today at Aldi

I went into an Aldi store this evening and guess what I found? The first Christstollen of the year, beside loads of other really typical Christmas food. So I’m wondering – was my Chinese colleague right after all? Is Christmas really around the corner? Should I get ready? Or is this just time gone mad? Or, maybe an Aldi executive becoming desperate trying to come up with the next feast day to sell sell sell? Like ‘Wintergrillen’ in January? In my own mind, there is time for everything (like in the brilliant song by the Birds). A time to cry, a time to say sorry, a time to forgive, and a time to celebrate Christmas – but definitely not in September. That would be too early for anybody’s taste – except, obviously, for that of the Aldi sales manager.

Oh – please keep voting for Hospi-tales on http://www.blogawardsireland.com/best-blog-post-2014/ – we are at incredible magic #3!

Just saw on the RTÉ news that Seán FitzPatrick will be getting legal aid.  Seán FitzPatrick was, just in case you have forgotten (or are to young to remember:), the chairperson of Anglo Irish Bank until 2008 when he had to resign because of scandals leading to a collapse of the bank’s share price and eventual nationalisation in late January of 2009, for which people in Ireland are still paying. The Irish Citizens Information website says: “The Legal Aid Board provides legal aid and advice in civil cases to people in Ireland who satisfy certain requirements (principally, their means must be below a certain limit and there must be merit in the case)”. – In other words: Seán has no money and his case has sufficient merit to justify the expenditure of our money to pay his solicitors. Mmmmmhhhh… what have I missed here?

Loads of examinations. Several doctors. And the verdict is: Pádraig has a haematoma (I’d call it a bruise) on his shoulder and upper arm. As he is getting blood thinners (that’s what everybody gets who spends many hours in bed and doesn’t move that much to avoid a thrombosis) that haematoma is a bit bigger than it would usually be, we were told. In 15 months, it’s the first time he’s had a haematoma. From today, he is getting more pain killers to deal with the discomfort (I’d call it pain), pain killers he did not get over the last two days because they could also have masked a fever caused by a possible infection, his doctor said, which has now been eliminated as a possible cause for the swollen shoulder. We don’t know yet what the cause of the haematoma is.

Pádraig has not got out of bed since Sunday. We did not get him into his wheelchair because we did not want to hurt his shoulder and arm even more. For his visiting friend from Ireland today, it was a great pity that we could not get out and about with him, at least up onto the roof garden. It’ll be months until she’ll be able to visit him again.

Today, just before checking out, I checked Aldi’s ‘reduced products’ stand and discovered a ‘Mangoteiler’. I can be an impulse buyer and have been known to buy stuff, especially in Aldi, not because I needed it, but because I thought: “Well, you never know. Although you mightn’t need this right now, one day when you will need it, you mightn’t find one.” Do you know this feeling? Are there ‘pockets’ in your house full of ‘stuff’ you bought, you keep, you don’t get rid of because, well: just in case? Yes?

I think we all have had moments when we did really stupid things. Things we regret now. When we hurt others or spend money on stuff we shouldn’t have spend it on. But there are limits. In my case it was the Mangoteiler. Had I bought this beautiful kitchen utensil today (although every household should have a Mangoteiler:), I know for certain that I would have been told to bring it back to the shop immediately for a full refund. And I know that – out of the context of the shop, in the cold light of the day – I would have realised that I had made a mistake. I would have said: “You are right and I’m sorry. I should not have bought this Mangoteiler. We do not need a Mangoteiler. It was a stupid idea to buy it and I’ll bring it back.” But, as Elton John sang back in 1976, “sorry seems to be the hardest word”, for many.

Oh – with 1,016 popular votes, Hospi-tales is currently at No. 3 in the Best Blog Awards Ireland 2014, just about! So please keep voting on http://www.blogawardsireland.com/best-blog-post-2014/  –  Thank you!

Something strange happened.

One of Pádraig’s friends told me he had the best two days of his life working up to 1 or 2 o’clock in the morning, for more than 12 hours every day. For free! AND, he had to raise the funding for the job.

Surely, work is not like that. Think: Monday morning. The alarm clock goes off. You beat it into the ground. Somehow you don’t manage. And it goes off again. (Whoever invented ‘snooze’ for alarm clocks should be sent somewhere very far away and never be allowed to return to civilisation again, in case he’d impose another of his ‘brilliant’ ideas on us.) You can’t win this fight against technology, so you give up, you give in, and you get up. You crawl out of bed. You wonder why weekends are so short and working weeks are soooo long. Why holidays never seem to last longer than the blink of an eye, but work never stops. You’re overqualified and underpaid. You invest your life into this job but most of the return goes to your employer. You have no control over what you’re doing, but made responsible for the outcome. – That’s work. Right?

The reason why this friend of Pádraig’s had the best two days of his life, working, for free, was because he did something that he really enjoyed doing; something that had meaning and made sense to him; that he had control over and that he was doing because he wanted to, not because he was told; something that involved 40 other brilliant people directly, and many many more indirectly; something that was so exciting that sleep seemed just like a completely overrated waste of time. He made loads of news friends in the process and even got to know a second cousin of his who he had never met before.

The result of his work, and that of his new and old friends, will soon hit the charts. We got a sneak preview of the CD yesterday – it’s fantastic. Really. Just unbelievably good. It’ll take just a little bit longer, a bit more time, but I tell you: it’ll be worth the wait! Dreamboat!

Pádraig’s heart rate was quite a bit higher than usual yesterday. Today, Pat noticed that his left shoulder was swollen. Something that would, in a ‘normal’ situation, not really be a cause of concern – and did not seem to cause any unease among the pflege, or care team – does make us really really nervous, especially when we see that Pádraig really seems to be in pain. We became quite concerned and upset. There were also some yellow patches on his arm near the swollen shoulder that looked very much like bruises to me. So they took blood samples and did another set of tests on those sample which, as far as we know, all turned out ok so far. We wanted to talk to a doctor but were told, they had all left (it was after 4pm). Eventually, it turned out that there were doctors, only that they weren’t too enthusiastic about getting involved in checking out Pádraig’s shoulder. One surgeon was going to double-check the x-rays and possibly take out some fluid from the shoulder to get that tested too. We waited for him but eventually had to leave.

We should have the results of the tests carried out tomorrow, the next working day. There is work, and there is work.

Music tip:
Klaus der Geiger: Nein, nein wir woll´n nicht eure Welt
“Wir sind dem Leben auf der Spur”
Germany’s best known busker!

Last Saturday week, my old school had a school reunion. I was looking forward to seeing some of my former school mates. There is about half a dozen of us of finished ‘Gymnasium’, our secondary school, together and who are still in touch. Apart from just a couple of friends from college and very few I got to know through work, these are my best and oldest friends here in Germany. As it turned out, I did not make it to the school reunion. We had an important, unforeseen, appointment here in Hamburg on the same day.

Even though I did not go, I realised that we are getting close, very close, to becoming the ancient guys in this group of former students. In 2017, it’ll be 40 years that we left secondary school, as the last class with what was called a “Humanistische Bildung”, at least that was the aim. For the most part, we did ‘stuff’ because we enjoyed it and we did not do ‘stuff’ that was boring. We certainly did not learn for money (or because we wanted to get a certain job) but because we wanted to know how things worked.

The trouble of that education is that we still keep asking. And you know how irritating questions can be that do not take ‘no’ for an answer.

Pádraig today had a high pulse, and high blood pressure, but no high temperature. We hope that all will be good by tomorrow, that it was just a short, temporary hiccup.

The highlight not just of the day, but of the week was Maitíu visiting today – and sharing with Pádraig and with us the magic that he manages to get out of his uileann pipes! He brought the house down and it was absolutely fantastic. It was his one day off, coming from Sweden to Düsseldorf, where he’ll be playing for a few nights.

I’ve mentioned that I feel so lost at times. Where do I belong? Germany, Ireland?

Tonight was not one of these nights. Tonight I knew that I will get an Irish passport and that I will learn Irish. I love my German family and my German friends, as always. But my heart is in Ireland. So much for today. Good night and sleep tight!

In Germany, the “Onkel aus Amerika” was always the big promise of new stuff. The Onkel was well travelled, had plenty of money, and, above all, was super cool. Today, Pádraig’s uncle from America arrived in Dublin. He’ll be with us on Monday.

We went out to the roof terrace, just in time for the rain. And just in time for a big party. A lady with iranian roots had her birthday, and her family, about a dozen really nice people had brought presents , coffee, tea, and home made cakes and biscuits. With a bit of combined iranian/german engineering ingenuity we managed to fix a huge sun umbrella that gave us all sufficient shelter from the rain to have a lovely time celebrating this lady’s birthday. It was so different from anything else we had seen before here: a big family getting together to celebrate with their really sick mother, cakes, candles, singing and all.

Yesterday, we had a meeting with a “Landesärztin”, a doctor of the Bundesland Hamburg, who explained to us the different options for further care for Pádraig, if and when he will be leaving the Schön-Klinik. There was nothing concrete, it was a first meeting we had with her after all, but we are beginning to learn what the German health system offers to people like Pádraig who are slowly recovering from a very severe brain injury and multiple operations. What was, perhaps, most surprising was how much the “Landesärztin” tried to convince us that we, too, had a life, and that we had to look after us, too, our life, our work, our well-being. Which lead to her strong suggestion to find a place for Pádraig where we would not be the main people responsible to look after him. Comparing the number of people who visit people in Germany in Ireland, this seems to be the manifestation of a big cultural difference between the two countries. Germans hand over the responsibility to the ‘professionals’, Irish people get involved and are very slow to hand over responsibility of care to others. Still not sure how to explain this, but this is another big cultural difference.

I missed it (no surprise there, unfortunately; wasn’t the first time) but when Pádraig’s uncle was on the phone to him today from Dublin, and when he told Pádraig that he had brought over ‘stuff’ for him –  there was the closest thing to a laugh and a big smile Pádraig has ever shown over the past year. Nothing like an uncle from America!

He would have smiled again, had we been able to show him tonight the brilliant pictures from today’s Swim for Pádraig, organised by Leinster Open Sea Swim. He’ll have to wait until tomorrow!

Here’s a short report from a good friend (who graciously ignored my distinguished record as a sea swimmer). Pádraig would have really really loved the day!

We had a great afternoon at the Swim for Padráig at Killiney today.  I came third (last).  Sean and Isaac swam really well.  Lynn provided the usual cake.  The only thing missing was you guys.  I am attaching some photos with this email.  Also going to send a second email with more photos from another devise.  Hopefully it will give you an idea of the lovely afternoon we had on the beach.

Thank you to Leinster Sea Swimming, especially our good friend Eoin Gaffney (who once took me under his wings for my second sea swim), and all who participated! – You made all the difference!!!

Someone told me some time ago that this is not a sprint, but a marathon. (Talking about marathons – are you on for 27 October, Merrion Square, Dublin?) We’re in this for the long run which will require an awful lot of preparation, support on the way, and a big pint of Guinness at the end. In a way, tough it definitely depends on how you look at it, in a way, we are still at the preparatory stage. Here’s an example from this morning, 8:45am.

Pádraig had a double physiotherapy session, with a super fit therapist practicing Vojta. At the end, I’m not sure who was more exhausted, Pádraig or the therapist. You wouldn’t do many of these sessions on one day – either as a patient or as a therapist. It was the first time I saw Pádraig lying on his front, supported by his hands and arms above his head, with his feet and legs positioned as if they were pushing him up the extra-wide therapy table. The therapist made Pádraig feel parts of his body I’m sure he had forgotten all about. It was wonderful – but I was in sweat just watching them. To me, this looked like physio for an athlete getting ready for the next Olympics. Wonderful.

A few weeks ago, a friend showed me a card Acquired Brain Injury (ABI) Ireland had distributed during this year’s elections. I had meant to share this with you for some time. So here it is. It’s one of the most ingenious ways I have seen to get people’s attention to the fact that many millions go into intensive care (quite profitable for the hospitals, the media here in Germany says), but very little is then spent on proper and timely rehabilitation which is very labour intensive and costly.

À propos Marathon – here is another first: a young person who doesn’t really know Pádraig that well and who, to be honest, looks a bit mad (in a nice way:) is going to run not just the Dublin Half Marathon later this month in the Phoenix Park for Pádraig – something he’s never done before. He is also going to run 42.194988km on the October Bank Holiday weekend: his first ever marathon. Please support his fundraising effort on iDonate.

I will have to get back to this one because – Donal will definitely not be on his own that day. I know a few people who will join him and, who knows, maybe we’ll have that point of Guinness at the end. Something that Pádraig, I know, has been looking forward to for more than a year now.

Remember: Vote for Hospi-tales on the Blog Awards Ireland 2014 every week – and get your family and friends to do so as well! Today, the blog was just a dozen votes away from going into second position which is crazy. Please keep voting and asking all your friends and family to vote vote vote! I’ll promise you anything you want if you give your vote to this blog!!!

Finally, there are only two days to go to the Big Sea Swim for Pádraig on 06 September.

Today’s German Music Tip
Adel Tawil, Weinen. A bit of a pop song from 2014 with a few lines that stuck with me, like “ich will dich einfach nur zurück”, “du bist der Beweis, dass es Liebe gibt”.
What’s hot
Vojta
What’s cold
Being stuck inside
The German word/phrase/verse of the day
Futschikato – look this one up in Google. Means: it’s gone, weg…

A few things first. News. Nothing dramatic, but worthwhile sharing. First, it turns out that Pádraig has a really great physio therapist. He is using something called Vojta Therapy which is working wonders on Pádraig apparently. We’ll join this therapist tomorrow morning at 8:45 for a session with Pádraig and I’m really curious to see how this works. Second, Pádraig has developed a great relationship with his music therapist. At the beginning we were not so sure about the benefits of music therapy – we were looking for ‘hard core’ physical therapy, the more the better – but have learned and observed the magic that is happening there between Pádraig and the therapist. It is really something else. To me, this man through his music and dedication has really found a door to communicate with Pádraig. Third, to us it seemed that Pádraig was doing better answering questions and eating than on other days. Not sure if this is the ‘drugs at work’ or whether it was just one of those good days. Finally, we had an ad hoc meeting today with Pádraig’s physio and OT, together with someone from what in Germany is called a ‘Sanitätshaus’, the suppliers of ‘gadgets’, wheelchairs, for example.

(As an aside, this meeting of about 45 minutes counted as a double therapy session. To explain: there are 300 minutes of ‘therapy’ Pádraig and other patients like him are entitled to per day. 180 minutes are for ‘Pflege’ (nursing and care), 120 minutes are for ‘proper’ therapy. Today’s meeting with the lady looking after the wheelchair, counted for 90 minutes (45 minutes x 2) – which left 30 minutes for music therapy.)

So what about the change?

I looked back today at the different situations we found ourselves in over the past 15 months or so. Coming to Germany, we were so full of hope and energy. We believed that access to first class therapy here in Hamburg would really turn things around for Pádraig. Looking back, he did get so much better, although he is really taking his time, so he is.

In the Schön-Klinik, doctors have started to mention that there isn’t really that much more they think they can do for Pádraig. Following our visits to several different rehab centres, we kind of agree with them. But then, we did not come here primarily for Pádraig to be looked after by doctors, but by therapists. And having quality time with quality therapists ain’t easy.

In addition, I have really got very tired of fighting the impossible fight in institutions. There will always be some really excellent people, but there are also some not to brilliant people. They all have different views and approaches, some really good and convincing, some not quite.

If you count the hours, I think Pat and I are delivering more ‘therapy’ to Pádraig than anyone else. There is no way we could do this at the level of his new brilliant Vojta specialist, or his magical music therapist, but we are certainly putting in the same if not more time.

And here is the change: I believe Pádraig will soon (within a few months) be leaving institutionalised care. And we will have to find the best way possible to look after him ourselves. So from now on, that’s what we’ll be doing: getting ready for the big day.

One stepping stone towards that day is getting him a new wheelchair – and there are amazing ones around that would really help him, literally, to get onto his feet. Check this out.

Loads of writing. Few pictures. Lots of thoughts.